Why Autism is Underdiagnosed in BIPOC Communities (and Why Self-Diagnosis is Valid)
If you’re an autistic person of color who feels alone — that makes sense, and you’re also not alone. Autism is often depicted as a white experience, though it shows up across all races, cultures, and identities. Let’s explore why self-diagnosis is valid, especially in the context of systemic challenges faced by BIPOC communities.
What is autism?
Autism is a neurodevelopmental profile, or neurotype. In other words, it’s a type of brain-style and nervous system wiring.
While autism presents differently in each person, common themes across autistic experiences include:
hypersensitivity to stimuli (i.e., reduced tolerance for loud noises, bright lights, etc.)
monotropic processing style (tendency to focus deeply on a few things at a time, making it seem like they’re “in their own world”)
preference for routines, familiarity, and certainty
social behaviors & communication styles that differ from what’s considered “normal”
repetitive behaviors (i.e., stimming, echolalia)
deep special interests & passions
Many people experience their autism as a disability, due to sensory challenges, lack of social acceptance, and lack of accommodations in a world designed for neurotypical brains.
Many people also experience their autism as an identity – a connection to a community, and a meaningful way of experiencing the world.
Within Western mental health, autism is considered a diagnosis – formally referred to as “Autism Spectrum Disorder (ASD).”
Please note that while ASD is an official medical diagnosis, this blog post will refrain from using the term “ASD,” due to its pathologizing approach to autism as a “disorder.” Instead, we will use the term “autism,” reflecting the preferred language of most autistic folks.
>> To learn more, check out this blog post: “Autistic Person” vs “Person with Autism”: What’s the Difference? | A Neurodivergent Therapist’s POV
Why is autism underdiagnosed in BIPOC (Black, Indigenous, People of Color) communities?
Mainstream depictions of autism tend to center on white experiences (and often white, male, and high-socioeconomic class experiences) – leading to the common assumption that autism “looks” a certain way.
A 2020 article*, published by Autism in Adulthood, states:
“People of color remain consistently under-represented in autism research, and dialogues regarding the impact of racial and ethnic discrimination on autistic people of color have been limited.”
In reality, autism is not a monolithic experience. Autism shows up across all communities, genders, races, cultures, and identities.
A 2021 study* states:
“Although the prevalence of ASD has been found not to differ across racial and ethnic groups, studies have found that White children and those of higher socioeconomic status are more likely to be both identified and diagnosed with ASD earlier compared with Black, Latinx, and Asian children, as well as children from low-income families.”
Here are a few reasons why autism is underdiagnosed in BIPOC, and other marginalized, communities:
(1) Bias in autism research & diagnostic criteria
The disproportionate focus on white, male experiences in early autism research may lead even the most well-trained professionals to overlook non-stereotypical presentations of autism, or to misdiagnose autistic folks with inaccurate (or incomplete) labels.
Autism doesn’t exist in a vacuum – it’s influenced by culture, gender, age, and other identities – and unfortunately, current mental health practices don’t always account for these nuances.
(2) Lack of access to formal autism diagnosis
Formal autism assessments are financially inaccessible for some people, as they aren’t always covered by health insurance. Additionally, some individuals might prefer not to use insurance, due to potential privacy concerns.
Logistically, finding the right assessor can be complicated. It may be difficult to find a professional with availability (as opposed to a months-long waitlist), or one who understands non-stereotypical presentations of autism in women, BIPOC individuals, LGBTQ+ people, and other underrecognized populations.
(3) Barriers to accessing healthcare in general
BIPOC, and other marginalized communities, face systemic barriers to accessing quality healthcare. Racial bias within the medical system* can lead to misdiagnosis and inadequate treatment.
Lack of cultural sensitivity among medical professionals means that white experiences are viewed as the “default,” missing important nuances when it comes to the care of BIPOC individuals.
Is it okay to self-diagnose as autistic?
Yes – it is 100% okay and valid to self-diagnose, or self-identify, as autistic.
This is a common consensus within the autistic community, which includes both self-diagnosed and formally-diagnosed folks.
Self-diagnosis and formal diagnosis are both valid options.
It is up to you how you choose to understand yourself and in what ways you reach this understanding.
Here are a few reasons why some people might choose to self-diagnose/self-identify as autistic.
(1) Self-diagnosis may be more accessible.
The process of self-diagnosis doesn’t typically cost money – just time.
If you’re an adult who’s questioning whether you’re autistic, your self-diagnosis process may span weeks, months, or years, and involve any of the following steps:
learning about autism and neurodiversity via books, Internet sources, and trusted people in your life
noticing how your lived experiences correlate with the experiences of other autistic people; and which autistic traits you tend to exhibit
taking self-guided autism screening assessments
connecting with autistic or neurodivergent communities
arriving at an understanding of yourself that feels right to you – whether you choose to identify as autistic or neurodivergent; or whether you don’t resonate with any labels at all
(2) Self-diagnosis may feel safer for people who distrust the medical system.
If you’ve had negative experiences with mental health & medical providers – like feeling invalidated when you report pain and other symptoms; receiving inadequate treatment; or struggling to access treatment in the first place – you’re absolutely not alone.
It’s completely understandable if, having been hurt or neglected by these systems, you don’t wish to engage with them if you don’t have to.
Some people of color may choose to self-diagnose/self-identify within the autistic community because they do not feel safe discussing an autism diagnosis with a mental health professional, or having an autism diagnosis on their medical record (especially in a sociopolitical climate that feels particularly hostile toward marginalized populations).
(3) Self-diagnosis of autism may provide you with the info you need to understand yourself + take care of your needs.
Folks who self-diagnose as autistic (typically after months/years of research and self-observation) tend to be accurate. According to an article by Embrace Autism*:
“Autism is uniquely suited for self-identification due to its intrinsic, lifelong nature.”
“Recent philosophical and psychiatric discussions argue that autistic individuals may have privileged access to their own cognitive and sensory experiences, granting them a unique ability to recognize and assess their autistic traits more accurately than non-autistic clinicians or external evaluators.”
Some self-diagnosed autistic folks may not see additional benefit in pursuing a formal diagnosis.
Given the wealth of high-quality online information, created by and for autistic people, many feel they already have the resources they need.
(And if you need additional support in understanding yourself and taking care of your needs, consider working with a neurodiversity-affirming therapist.)
Bottom line: self-diagnosis as an autistic adult is 100% valid and okay!
All that being said, it’s important to acknowledge why self-diagnosis isn’t the right answer for everyone.
Neurodivergent folks are not a monolithic group – we’re diverse, with many different lived experiences and needs.
Here are a few reasons why you might choose to pursue a formal autism evaluation.
(1) An official autism diagnosis may increase access to accommodations at work, at school, and in daily life.
(2) Formal diagnosis may provide the external confirmation + validation that you need.
(3) Formal diagnosis may provide a depth + thoroughness of information about your neurotype that may not be available via self-research (or that you may not wish to spend time researching by yourself).
IN SUMMARY…
Autism is under-diagnosed in BIPOC communities, due to:
bias in research & diagnostic criteria
lack of access to formal diagnosis
barriers to accessing healthcare in general
It’s 100% okay, and valid, to self-diagnose as autistic.
Self-diagnosis may be more accessible (financially & logistically), while formal diagnosis may be inaccessible.
Self-diagnosis may feel safer, especially if you’ve had negative experiences with the mental health system.
Self-diagnosis may provide you with the info you need to understand yourself & take care of your needs, and that is the goal of any diagnosis.
Formal diagnosis & self-diagnosis are both valid. It’s an individual decision based on many factors, and there is no right or wrong way.
This blog post highlights why self-diagnosis is valid, especially in the context of systemic challenges faced by BIPOC communities.
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About the Author
Liz Zhou (she/her) is a neurodivergent therapist, coach, and speaker. She helps highly sensitive, neurodivergent adults & couples heal their nervous systems and connect with their authentic selves, using brain-body modalities (Brainspotting, EMDR, IFS, psychedelic integration) that are quicker & more effective than traditional talk therapy. Liz offers Nervous System Healing Intensives online worldwide.
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Research Cited in Blog Post
*https://pmc.ncbi.nlm.nih.gov/articles/PMC8992862/ - An Expert Discussion on Structural Racism in Autism Research and Practice
*https://pmc.ncbi.nlm.nih.gov/articles/PMC8500365/ - Racial, Ethnic, and Sociodemographic Disparities in Diagnosis of Children with Autism Spectrum Disorder
*https://www.tandfonline.com/doi/abs/10.1080/09638288.2024.2364823 - Experiences of racism and racial disparities in health care among children and youth with autism and their caregivers: a systematic review
*https://embrace-autism.com/is-self-assessment-enough/ - Is self-assessment enough?
